A caretaker for a senior with CLL is
often much more than a conduit to appointments and drugs. Many caregivers want
to know why a particular drug is being prescribed, what other options there are
and how the various treatments will impact the person with CLL in their daily
lives.
There are many new treatments being given
to people with CLL. Many of these are being used as targeted treatments. They
may be used alone or in various combinations, depending on the patient and
disease characteristics. Despite availability of multiple new treatments, there
are many factors that must be taken into consideration to choose the
appropriate treatment option.
Chronic Lymphocytic Leukaemia or CLL is a
form of blood cancer characterized by presence of abnormal lymphocytes. These
are a type of white blood cells which, in people with CLL, slowly start to
multiply in the blood, in the bone marrow where all the blood cells are
produced, and in the lymphatic system of tissues and organs throughout the body.
It tends to develop in middle aged or older people.
However, the majority of individuals with
CLL are asymptomatic at the time of diagnosis and are therefore monitored on an
active surveillance or watchful waiting basis until such time as the disease
progresses and requires treatment.
In summary, while there are times when
CLL needs to be treated, there are also times when regular monitoring is
enough. When there are signs of progression, or symptoms, then treatment may be
indicated. At that time, enlarged lymph nodes, and low blood counts, as well as
fatigue, night sweats, unexplained weight loss, and fever, can be symptoms
which indicate the need for treatment.
Two people of the same age have very
different physical, mental, social and financial circumstances. Hence treatment
decisions are based on more than age of patient.
For an older adult, clinicians may
consider:
●
Overall physical health and
functional ability
●
Other medical conditions and
medications
●
Kidney and liver function
●
Blood-cell counts
●
CLL stage and rate of progression
●
Genetic findings, including TP53
abnormalities and del(17p)
●
Previous CLL treatment
●
Risk of infections and other
treatment-related complications
●
The person's preferences and
ability to manage treatment
Geriatric assessment is done to evaluate
physical function, cognitive status, nutrition and social support to aid cancer
treatment decisions.
The assessment for a geriatric patient
with CLL will likely differ greatly from that of a younger patient with the
same diagnosis. The results can help the patients and caregivers in evaluating
treatment options.
Treatment for CLL is increasingly moving
towards targeted therapy using a medicine that in turn uses a particular
protein to kill CLL cells.
The Bruton tyrosine kinase (BTK)
inhibitors are a class of targeted therapy for CLL.
Examples include:
●
Acalabrutinib
●
Zanubrutinib
●
Ibrutinib
These types of therapies can inhibit the
BTK protein and other related proteins which affect the B-cell in terms of
development and in the CLL cell in terms of survival.
Additionally, while latest CLL treatments are
administered via oral tablets or subcutaneous injection rather than via an IV
line and infused into a vein over hours, these novel oral therapies can cause
significant side effects and have drug-drug and drug-food interactions,
requiring the monitoring of such issues as the patient’s blood counts, cardiac
function, risk of bleeding, risk of infection, and other treatment-related
adverse effects.
Venetoclax is a BCL-2 targeted therapy.
BCL-2 is a protein that certain cancer cells use to survive. The most common
use of Venetoclax in CLL is in combination with other therapies such as
obinutuzumab and rituximab.
Venetoclax is being given in a new manner
in order to decrease the risk of developing TLS (Tumor Lysis Syndrome) during
the early dose-escalation period of treatment. Normal laboratory values and
gradually increasing doses of venetoclax will be a cornerstone of its early
administration.
Caregivers should be especially vigilant
in following a treatment plan that involves a monitoring schedule for a
treatment like venetoclax.
The CLL treatment landscape has evolved
significantly in recent years. For example, in February 2026 the U.S. Food and
Drug Administration approved acalabrutinib in combination with venetoclax for
CLL treatment.
Targeted treatments are designed as per
patient and disease characteristics. Approval of a combination of cancer drugs
by the FDA does not automatically mean that it will be the an appropriate
treatment option for a particular patient with CLL. Rather, it will be one of
the many considered for an individual patient on the basis of their disease,
medical history, other drugs that they are taking, how they tolerate individual
drugs, and their preferences.
Even after treatment has seemingly been
effective, CLL can return at a later time, and treatment options that are
relevant for patients with relapsed CLL are largely based on the prior
treatments that have been used.
Pirtobrutinib is a non-covalent BTK
inhibitor. Recently, pirtobrutinib was approved by the FDA for the treatment of
adults with CLL or SLL who have had prior treatment with a covalent BTK
inhibitor.
There are many other treatments,
including new targeted therapies and treatment combinations, that are being
investigated for patients with CLL that has become resistant to treatment.
These are often investigated in the context of a clinical trial.
Just as every person with CLL is
different, so too is every person’s CLL. The differences can be in terms of the
individual’s prognosis and in terms of the choices for treatment. Certain
genetic and molecular features of the cancer can affect both.
Among the key findings that can guide
treatment decisions for CLL patients are TP53 abnormalities and deletion 17p
(del(17p)). These can mark a more aggressive disease that is harder to treat
with standard CLL therapies.
A patient’s genetic makeup can influence
treatment options during the treatment, or even before starting the treatment.
Caregivers play a vital role for elderly
patients during treatment for CLL and can monitor for changes and report to
clinicians if needed.
Depending on the treatment, clinicians
may monitor:
●
Blood-cell counts
●
Signs of infection
●
Bleeding or bruising
●
Heart-related symptoms
●
Kidney function
●
Liver function
●
Medication interactions
●
Treatment-related fatigue or other
side effects
A list of the patient’s prescription
medicines, over-the-counter products, and supplements can be maintained by
caregivers. These can potentially cause an interaction with the treatment of
the patient.
Caregivers must report new or unusual
symptoms to the treating healthcare team.
Useful questions for the CLL Care Team
appointment.
●
Does the CLL currently require
treatment?
●
What is the goal of treatment?
●
Which treatment options are
appropriate for this patient?
●
What test results influenced the
treatment recommendation?
●
Has genetic testing been
performed?
●
What side effects should the
family watch for?
●
Which symptoms require urgent
medical attention?
●
Are there interactions with the
patient's existing medicines?
●What should be the frequency
of blood work check and monitoring?
●
Are clinical trials appropriate?
Written notes can also be helpful to
record information that the family needs to remember in order to follow the
instructions given by the CLL Care Team, as well as remembering the dates and
times of the family’s and patient’s future appointments for treatment and
check-ups.
Finally, CLL care includes more than
leukemia control. Patients, especially of advanced age, often suffer from a
variety of problems including frequent infections, decreased appetite and
subsequent weight loss, extreme tiredness, depression, decreased mobility, and
other co-existing health problems.
Supportive care to treat symptoms and
problems of CLL can vary greatly from person to person. The caregiver
needs to report any change in the patient’s physical condition or in their
daily functioning, such as loss of appetite, or lack of energy, etc.
Current CLL treatments include targeted
therapies, BTK inhibitors, and venetoclax-based combinations, as well as newly
approved treatments for relapsed or refractory CLL, such as new agents for
previously treated patients like pirtobrutinib, which was recently granted a
traditional approval for a specific subset of previously treated CLL patients.
For older adults, the most appropriate
treatment depends on individual patient and disease characteristics and may not
necessarily be the latest treatment option. Individualized management of CLL,
taking into consideration the patient’s specific leukemia, previous treatment,
other health problems, other current diseases, potential drug toxicities and
patient preferences is typical.
These forms of support can help
caregivers play an active role throughout the treatment process
Medical disclaimer: The purpose of this article is for general information and for
education purposes only. The CLL treatment of individual patients has to be
decided by their qualified healthcare providers after thorough examination of their
disease, overall health, as well as other coexisting medical conditions.
Why Having a Healthcare Advocate Can Make a Difference in Your Medical Journey. Navigating the healthcare system can sometimes feel overwhelming, especially when dealing with a new diagnosis, managing a chronic condition, or making important decisions about medical treatment. Between scheduling appointments, understanding medical terminology, communicating with multiple healthcare providers, and keeping track of treatment plans, patients and their families can quickly become frustrated or confused. This is where a healthcare advocate can make a meaningful difference. A healthcare advocate serves as a knowledgeable support person who helps patients navigate the healthcare system, understand their medical options, communicate with healthcare professionals, and make informed decisions about their care. Whether someone is facing a serious diagnosis, preparing for surgery, managing a long-term illness, or simply trying to understand their treatment options, having an advocate can provide valuable guidance and reassurance throughout the medical journey. What Is a Healthcare Advocate? A healthcare advocate is someone who helps patients understand and navigate the often-complicated healthcare system. Their role is to support patients by helping them access information, communicate with medical professionals, coordinate care, and better understand their healthcare choices. Healthcare advocates may assist with a variety of needs, including: Helping patients understand medical diagnoses and treatment recommendations. Preparing questions for upcoming doctor appointments. Helping patients communicate concerns and symptoms to healthcare providers. Coordinating appointments with multiple specialists. Reviewing treatment options and helping patients understand the information provided by their medical team. Helping patients obtain and organize medical records. Supporting patients who are considering a second medical opinion. Helping families understand available healthcare resources and services. A healthcare advocate does not replace a physician or make medical decisions for the patient. Instead, they help patients become more informed, confident, and involved in their own healthcare decisions. Understanding Your Diagnosis and Treatment Options Receiving a medical diagnosis can be an emotional and confusing experience. Patients may leave a doctor's appointment with more questions than answers, especially when they are unfamiliar with medical terminology or are trying to process unexpected news. A healthcare advocate can help patients better understand the information they receive from their healthcare providers. For example, after receiving a diagnosis of cancer, heart disease, diabetes, or another serious medical condition, a patient may need to understand several aspects of their care, including treatment options, potential side effects, follow-up appointments, and lifestyle changes. An advocate can help organize this information, identify questions that need clarification, and encourage patients to discuss their concerns directly with their physicians. Having someone help explain complicated healthcare information can make it easier for patients and families to understand their situation and feel more prepared for the decisions ahead. Improving Communication Between Patients and Doctors Good communication between patients and healthcare providers is essential for effective healthcare. However, patients sometimes feel intimidated, rushed, or unsure about how to express their concerns during medical appointments. They may forget important questions, struggle to describe their symptoms, or leave without fully understanding their physician's recommendations. A healthcare advocate can help bridge this communication gap. Before an appointment, an advocate may help patients prepare a list of questions, organize medical information, and identify concerns they want to discuss. During an appointment, when authorized and welcomed by the patient and provider, an advocate may attend to help take notes, ask questions, and make sure important information is understood. After the appointment, an advocate can help patients review their notes, understand the next steps, and identify any follow-up questions. This additional support can be particularly helpful for older adults, individuals managing complex medical conditions, and patients who feel overwhelmed by the amount of information they receive. Coordinating Care Among Multiple Healthcare Providers Many patients receive care from several different healthcare professionals. Someone managing a chronic illness, for example, may see a primary care physician, cardiologist, neurologist, endocrinologist, or other specialists. Although each provider plays an important role, coordinating appointments, medical records, treatment recommendations, and follow-up instructions can become challenging. A healthcare advocate can help patients stay organized and navigate these different aspects of their care. Care coordination may include: Helping schedule appointments with specialists. Keeping track of upcoming medical visits and follow-up care. Organizing medical records and test results. Helping patients communicate information between healthcare providers. Identifying questions about conflicting or unclear treatment recommendations. Helping patients understand referrals and recommended next steps. When patients have multiple medical providers, having someone help organize their healthcare information can make the process less stressful and help reduce the likelihood of important details being overlooked. Helping Patients Make Informed Healthcare Decisions Medical decisions can have a significant impact on a person's health, independence, finances, and quality of life. Patients may be asked to consider medications, surgical procedures, treatment plans, rehabilitation services, or other medical interventions. Making these decisions can be difficult, particularly when patients are facing unfamiliar medical conditions or complicated treatment choices. A healthcare advocate helps patients understand the information available so they can have more productive conversations with their medical providers. An advocate may help patients: Understand the purpose of recommended treatments. Prepare questions about potential risks and benefits. Discuss alternative treatment approaches with their physicians. Understand what to expect during recovery. Explore whether a second medical opinion may be appropriate. Consider how different treatment options may affect daily life and personal goals. The goal is not to tell patients which treatment to choose. Instead, it is to make sure they have the information and support needed to participate in decisions about their healthcare. Ultimately, medical decisions should reflect the patient's needs, values, preferences, and conversations with qualified healthcare professionals. The Importance of a Second Medical Opinion When facing a serious or complicated diagnosis, patients may benefit from seeking a second medical opinion. Getting another professional perspective can help confirm a diagnosis, provide additional information about treatment options, or identify alternative approaches. However, knowing when and how to seek another opinion can be confusing. A healthcare advocate can help patients understand the process and prepare for a second opinion appointment. This may involve organizing medical records, collecting test results, identifying specialists, and preparing questions about the diagnosis and recommended treatment. Having additional information can help patients feel more confident about the decisions they make and better understand the options available to them. Seeking a second opinion does not mean a patient distrusts their current physician. It is simply another way to become informed and make thoughtful decisions about their health. Providing Support for Family Members and Caregivers A serious medical condition affects more than just the individual receiving care. Family members and caregivers often become involved in managing appointments, understanding treatment recommendations, communicating with physicians, and providing emotional support. These responsibilities can become overwhelming, especially when family members are balancing caregiving with their own personal and professional obligations. A healthcare advocate can help ease some of this burden by providing guidance and organizational support. With the patient's permission, an advocate can help family members understand the care plan, keep track of upcoming appointments, organize medical information, and identify questions that need to be addressed. This support can be particularly valuable when adult children are helping aging parents navigate healthcare decisions or when families live in different locations. Having an additional knowledgeable person involved can help families feel more supported while keeping the patient's preferences and needs at the center of care. When Should You Consider Hiring a Healthcare Advocate? There is no single time when everyone needs a healthcare advocate. Some people benefit from assistance during a major medical event, while others appreciate having ongoing support as they manage complicated healthcare needs. You may want to consider working with a healthcare advocate if: You have recently received a serious or unexpected medical diagnosis. You are managing multiple chronic health conditions. You have difficulty understanding medical terminology or treatment recommendations. You see several specialists and need help coordinating your care. You are preparing for surgery or a complicated medical procedure. You want assistance obtaining a second medical opinion. You feel rushed or uncomfortable during medical appointments. You are helping an aging parent or loved one navigate the healthcare system. You want someone to help organize medical records, appointments, and treatment information. Even patients who are generally comfortable managing their healthcare may benefit from having an advocate during particularly complicated or stressful medical situations. How to Choose the Right Healthcare Advocate Choosing a healthcare advocate is an important decision. You want someone who understands the healthcare system, communicates effectively, respects your preferences, and has your best interests in mind. When considering an advocate, look for someone who: Has experience navigating healthcare systems and working with patients. Communicates clearly and listens carefully to your concerns. Understands the importance of patient choice and confidentiality. Can help organize medical information and coordinate care. Is willing to explain complicated information in an understandable way. Respects your relationship with your physicians and other healthcare providers. Provides personalized guidance based on your individual needs. It is also important to understand what services are included, how the advocate works with healthcare providers, and whether services are available in person, remotely, or both. A good healthcare advocate should help you feel informed, respected, and empowered rather than pressured into making decisions. Take an Active Role in Your Healthcare Journey Your health is one of your most valuable assets, and you deserve to feel informed and supported when making decisions about your medical care. Unfortunately, navigating the healthcare system is not always easy. Complicated diagnoses, multiple specialists, confusing medical information, and difficult treatment decisions can leave patients feeling uncertain about what to do next. A healthcare advocate can help make the process more manageable by providing guidance, improving communication, organizing healthcare information, and helping patients understand their options. Most importantly, having an advocate can help patients become more confident participants in their own healthcare journey. You do not have to navigate complicated medical situations alone. With the right support, you can ask better questions, understand your choices, and work more effectively with your healthcare team. If you or someone you love is feeling overwhelmed by the healthcare system, consider reaching out to Vital Voice Healthcare Navigation. Having a knowledgeable advocate by your side can make a meaningful difference in understanding your care and moving forward with greater confidence.
Hey there! Do you already have your holiday decorations put away, or will your Christmas tree be up until February? To be honest, I can be either person, depending on the year. This year, Ive been a little slow to pack up my garlands and lights, but thats ok. Organization doesnt mean being perfect all the time.The holiday season can bring fun and joy, but it can also bring chaos to the systems in your home. Theres a proliferation of stuff -- cards, packages, gifts of all kinds, decorations, wrapping paper, social engagements, emotions. After all the partying is over, we can be left with a feeling of overwhelm. As a professional organizer, here are my tips for how to handle all of the stuff that came into your house over the holidays and bring (a little more) peace to your home and heart: Decide what to keepThis is really the first (and most critical) thing to do as soon as youre ready to move on from the holidays. Take a look at everything that came into your house during the season and keep only what you truly want to have. I dont recommend keeping anything you dont love, need, or want, even if it was a gift (more on that below). If you shove that ugly sweater in a closet, forget about it, and discover it two years later, youll still have to make the same decisions about what to do with it. Decide what to do as soon as you can. Find a home for everything youre keeping (and put it there right away). If you are keeping a newer/different version of something you already own (for example, you got a nicer coffee maker for Christmas), consider donating or discarding your old item. In other words, follow the one-in, one-out rule if its appropriate.Let go of unwanted gifts Something I hear all of the time from clients is I dont really like this, but it was a gift and I feel guilty about giving it away.I know that gifts can be tricky. I think honoring the intention of the gift given to us is actually more important than holding onto the actual physical object. Usually, someone gives you a gift to show you that they care about you or because they hope youll enjoy it, not because they expect you to become the permanent caretaker of that object. (And if someone gives you a gift receipt, they dont mind if you return it dont feel guilty!)So how do I handle gifts I dont love? I go out of my way to thank the giver in a way thats sincere. I dont tell someone I loved a particular gift if I didnt, but I do thank them for thinking of me and for their generosity. If I dont want or cant use a gift, I pass it on to someone who can enjoy it more than me. That may mean donating it to a charity, giving it away through my local Buy Nothing group, or regifting to someone who I know would appreciate it. Sort the trash and recyclingYou probably ended up with lots of boxes after Black Friday. Go through any extra packaging and recycle, throw away, or give away what you cant use immediately. My clients often have a ton of empty boxes they are saving for someday, but those boxes can take up a lot of space (and its likely that more will come into your home soon). Getting them out is one of the easiest ways you can make your home feel less cluttered immediately. If you have boxes in good condition, you can post them on your local Buy Nothing or neighborhood social media group for someone who is moving. Take another look at your holiday cardsBefore you shove them into a box, look at each card individually. Is this specific card something that will be meaningful to you in a year? 10 years? If its not, appreciate the person who sent it to you and recycle the card. If it truly is a keepsake, save it in an album or memory box. Evaluate your holiday decorMany of my clients struggle with accumulating and storing holiday decor. I recommend thinking about any decor you didnt put out this year will you put it out next year, or are you over it? Do you have more than you can use? Set aside anything you no longer love or want to donate next fall before the holidays (generally, thrift shops do not have space to store out-of-season items for long periods of time). And make sure to carefully store the items you do love and so you can enjoy them next year
As we age, staying socially connected can become just as important as staying physically active. Friendships, family relationships, community involvement, and regular social activities can bring joy and purpose to everyday life.Retirement and other life changes can sometimes reduce opportunities for social interaction. Children may live farther away, friends may move or pass away, and health or mobility changes may make it harder to participate in activities outside the home.For these reasons, finding meaningful ways to stay connected is an important part of healthy aging. Social connection can support emotional well-being, encourage an active lifestyle, and help seniors continue to feel a strong sense of belonging.Social Connection Can Help Reduce LonelinessLoneliness can affect anyone, but older adults may experience changes in their social networks as they age. Spending too much time alone can leave a senior feeling disconnected from family, friends, and the community around them.Regular social interaction provides opportunities to talk, laugh, share experiences, and simply enjoy another person's company.Even simple activities such as having coffee with a friend, eating a meal with others, attending a group activity, or taking a walk together can help a senior feel more connected.Friendships Give Seniors a Sense of BelongingFriendships remain important throughout life. Having people to talk with and share experiences with can provide comfort and companionship.Senior living communities can provide opportunities to develop new friendships while maintaining existing relationships. Shared meals, social gatherings, clubs, classes, and recreational activities give residents natural opportunities to meet people with similar interests.Making new friends can help a senior feel that they are part of a community rather than living in isolation.Social Activities Can Provide a Sense of PurposeHaving something to look forward to can make a meaningful difference in a person's daily life. Social activities give seniors opportunities to participate, contribute, and remain involved.For example, a senior might: Volunteer in the community Participate in a hobby group Attend an educational class Help organize an activity Join an exercise or walking group Enjoy music, games, or crafts with others Participate in community events These activities can provide structure while encouraging seniors to continue exploring their interests.Staying Connected Can Encourage Physical ActivitySocial interaction and physical activity often go hand in hand. Seniors may be more motivated to take a walk, attend an exercise class, or participate in an outdoor activity when they know friends will be joining them.Being active with others can make exercise more enjoyable and less like a chore.Regular movement is an important part of maintaining strength, balance, mobility, and independence as we age. Social activities that incorporate movement can provide both physical and social benefits.Social Engagement Keeps the Mind ActiveConversations, games, classes, hobbies, and other social activities can provide opportunities for seniors to think, learn, communicate, and solve problems.Trying something new or participating in a discussion with others can help keep everyday life interesting and mentally stimulating.Lifelong learning can also be an enjoyable way for older adults to meet people while exploring new interests or continuing to develop existing ones.Family Connections Remain ImportantWhile friendships and community involvement are valuable, family relationships can also provide an important source of social connection.Regular phone calls, video chats, visits, shared meals, and family activities can help seniors maintain close relationships with children, grandchildren, siblings, and other loved ones.When family members live nearby, visiting in person can be especially meaningful. When distance makes regular visits difficult, technology can help families stay connected between visits.Senior Living Communities Can Create Opportunities for ConnectionOne benefit of a senior living community is the opportunity to live among other people in a similar stage of life.Instead of having to arrange every social interaction, seniors may have activities and opportunities for connection close to home. Dining areas, common spaces, walking paths, fitness programs, educational opportunities, clubs, and community events can make socializing a natural part of daily life.Residents can choose the level of participation that feels right for them. Some may enjoy a busy schedule filled with activities, while others may prefer smaller gatherings and quiet conversations with friends.Staying Connected Can Help Seniors Maintain IndependenceSocial connection is also part of maintaining an active and fulfilling lifestyle. Seniors who remain engaged with others may be more likely to continue participating in hobbies, community activities, exercise, and other interests.Having friends and neighbors nearby can also provide an informal support network. Someone may notice when a friend isn't feeling well, offer encouragement, or simply check in after a difficult day.This sense of community can be especially valuable as circumstances change.It's Never Too Late to Build New RelationshipsSome seniors may hesitate to meet new people after moving to a new community or experiencing major changes in their lives. It can take time to feel comfortable in a new environment.Starting small can help. Saying hello to a neighbor, joining one activity, having a meal with others, or attending a class based on a personal interest can be a good first step.Over time, these small interactions can develop into meaningful friendships.How Families Can Encourage Social ConnectionFamily members can play an important role in helping an older loved one remain socially active.Consider encouraging a senior to: Stay in regular contact with family and friends Participate in activities they enjoy Explore new hobbies Attend community events Volunteer when possible Join an exercise or walking group Try a class or educational program Consider a senior living community if living alone has become isolating Most importantly, listen to what the senior wants. Social connection should be meaningful to the individual rather than simply adding more activities to their schedule.A Connected Life Can Be a Fulfilling LifeGrowing older brings many opportunities to enjoy new experiences, relationships, hobbies, and interests. Staying socially connected can help seniors maintain a sense of belonging and purpose while making everyday life more enjoyable.Whether through family, friendships, volunteering, lifelong learning, hobbies, or a senior living community, there are many ways older adults can remain connected.At Landis Homes, opportunities for community, friendship, wellness, learning, and meaningful engagement can be an important part of the senior living experience. Finding the right environment can help older adults continue living an active and connected life while building relationships and enjoying each new chapter.